Self-diagnosis

If you self-diagnosed autism you may wonder if it is valid compared to a professional diagnosis. This episode explores self-diagnosis and why it might be your best choice.

Transcript available at https://www.buzzsprout.com/1782001/14086100

Transcript

Is self-diagnosis valid? It might not be considered reliable by some or even accepted by others because it isn’t done by a professional.

Problem is that the majority of psychologists and others who diagnose autism only have experience diagnosing children and mostly male children. They don’t know what to look for in adults and that’s a problem with the reliability of going with a professional. 

Welcome to Meet My Autistic Brain. I’m your host, The Autistic Woman™. I discovered autism late in life and in this podcast I share my experiences and challenges so you can learn what it’s like to be autistic. This is the place to hear topics and stories you may relate to.

The answer to the question is yes, self-diagnosis is valid. I’ll tell you what I mean and why I believe that.

Since the beginning the scientific community believed that autism occurred only in boys. The criteria for diagnosis was based on this belief. The behaviors seen in boys drove the standards. Autism couldn’t occur in girls, women or men so went the thinking then and they weren’t considered.

The diagnostic criteria doesn’t consider that symptoms differ in girls (and probably adult men as well)

There is masking.

Now there are online tests, some are quite extensive. Many are the actual tests used by psychologists. The tests are based on the long-used ones for male children and adults.

If a person self-diagnoses it’s possible to misdiagnose as something else like ADHD or miss a co-occurring condition. In my case I was diagnosed with ADHD in my 40’s however autism was missed even by a professional.

One objection is that you can’t seek treatment if you self-diagnose. There isn’t any treatment for autism per se because it isn’t a disease. There may be treatments for some of the symptoms or co-occurring conditions like depression. 

—>Is self-diagnosis valid? It might not be considered reliable by some or even accepted by others because it isn’t done by a professional.

Problem is that the majority of psychologists and others who diagnose autism only have experience diagnosing children and mostly male children. They don’t know what to look for in adults and that’s a problem with the reliability of going with a professional. <—

The first evaluation I had was like that. I had already self-diagnosed. As part of a study I was supposed to be part of I was sent to be evaluated by a therapist. No tests were done, just a brief 15-minute interview. I didn’t understand a lot about autism, I just knew I am autistic. 

I was asked a series of questions. To the one about friends I responded that I wanted friends. I didn’t realize that many diagnosticians believe that autistics prefer not to have friends. Those of us in the autistic community know that isn’t true. Some autistics rather not have friends. They treasure their time alone and find social activities too draining. 

There are quite a few autistics who would like to have friends but don’t know how. Autism is a condition that makes social interactions challenging and at times nearly impossible. Our attempts at making or maintaining a friendship often fail when we say something inappropriate, sound critical, talk too much about our special interest, have that “look” on our faces or don’t follow up by contacting the friend.

Many autistics don’t go to social events, don’t take recreation classes, don’t join organizations, don’t hang around after class to chat with the teacher. We hide in our houses too much and don’t have the opportunity to meet others. That limits our chance to make friends.

Our families may encourage us to go out and do things so we can meet people. They may even feel frustrated with us that we don’t. The thing is that no matter how often we were to “practice” making friends, it’s only moderately successful. 

I can do small talk because I’ve learned to. I don’t like it but I can fake that I do. Then I will go and say something that in reality is insulting or brash that I didn’t mean that way. It was in my mind and it just came out. Later I worry about what I said.

When I do that it doesn’t accurately express my feelings. I can’t stop faux pas from happening. It’s as if it has control over what I say at times. I can’t predict it and I can’t prevent it. The only way I know of to handle it would be to say nothing at all. And that’s what we autistics often do. We sit quietly and add nothing to the conversation which doesn’t help us make friends. So it’s a vicious circle. It’s also one of the reasons we avoid social activities. We’re afraid of blurting out something we wish we could take back.

So, back to the story. The therapist raised an eyebrow when I said I want friends. She continued asking me additional questions. The problem for me, and I’ve now heard it from other autistics, is that I didn’t fully understand the question. To make matters more complicated I don’t do “unexpected questions.” My mind typically will go blank and because I know the person is waiting for an answer I might make something up. 

I missed the questions about loud noises bothering me, food textures feeling unpleasant and not wanting hugs. I just didn’t think those things applied to me because I took the questions literally. I also had not considered that my dislike of certain foods was in part because of the texture.

The therapist ushered me out and I could tell by the look on her face that I didn’t pass. She seemed annoyed with me as if I had wasted her time. I was out of the study.

I next met with a psychologist. She gave me the battery of tests. I couldn’t provide input from family for two reasons: many were no longer living and the ones who were would not have known what to look for or pay attention to. 

I remember struggling to make friends in high school so I went to my mother and asked her how to do it. Her reply was “if you want a friend, be a friend.” NOT an answer you give an autistic person. I needed step by step instructions including provisions for the unexpected. And to tell me to be a friend was begging the question. That was basically what I was asking her. How can I be a friend?

I’m certain my mother would have told a psychologist that I had friends. I don’t believe she ever saw me as a person who had problems with that.

The psychologist who did the evaluation said she did not diagnose people rather she evaluated them for referral to a psychiatrist for diagnosis. When she wrote her report it said I have the autistic traits to suggest a diagnosis of autism. 

By this point I was learning about the biases against autistic people and that there are laws that penalize us for being autistic. Think car insurance and health insurance. Think immigration. I’m sure there are more. 

In view of that I decided I didn’t want her to refer me to a psychiatrist for diagnosis. At that time I didn’t want it officially on a record.

Some time went by and I learned more about autism. It was becoming obvious then (things have changed slightly) that if I said I am autistic I got those standard responses like “oh you researched the internet and then decided you’re autistic” or “everyone is a little autistic.”

I wanted to do more. A trait of autism is this idealistic belief that everyone is fair or wants to be and will consider the facts and not judge. Naive I know. I wanted to teach lawyers and judges about autism so they would truly understand what it is. I wanted them to realize that someone they work with or a judge they’re in front of is autistic. 

What if I wasn’t believed without that piece of paper from a professional saying so? That concern stopped me from moving forward. I had no doubt about my autism but I knew others did and would. I knew self-diagnosis is valid but not everyone feels that way. 

What professionals have experience with adults and in particular female adults? Even though I am not a person of color I recognize that people who are have an even more difficult time finding someone to diagnose them. 

I concluded that I wanted an official diagnosis, not for me but for the naysayers. And you know what? I didn’t fool myself for a minute that I would then suddenly be believed. 

I searched unsuccessfully for someone with experience diagnosing adult women. I wasn’t able to pay the $3000 to $10,000 it costs in the US because insurance doesn’t cover it.  Time passed.

I didn’t doubt for one minute that my self-diagnosis was valid. Having done all the research I did and finally understanding how my symptoms presented themselves I realize that I am sensitive to noise and sometimes it’s soft sounds as well as loud, foods I don’t like since childhood I will never like, and hugs were sometimes uncomfortable but now that I understand the reason I am more at ease with them.

I take things literally. If I look at the tests I took online I still find myself arguing with what they mean. BTW I’ve talked to other autistics who have that same experience. Even if I try to answer them differently than what I think is an autistic trait, the tests say I am autistic. 

An example of a frustrating test question is “Would you prefer to go to the theater or a museum?” I’m not the only autistic person who thinks “it depends” and then feels frustrated at the question.

Self-diagnosis is the only diagnosis available to a large percentage of people, in fact, it might be the majority of adults who don’t have the resources and can’t find appropriate diagnostic services. I’ve heard that in the UK a person may have to wait 1-2 years for an appointment.

Psychologists are often unaware of the subtleties and expression of autism in adults. They may not consider that we struggle with vague or imprecise questions. They might overlook that we mask and the extent to which we do so in order to appear sociable. They may discount our own opinion and experience of autism.

Who is in a better position than an autistic person to understand autistic life? Take the online tests, listen to this podcast and others, write down what you think are autistic symptoms and experiences. If you conclude you are autistic then it’s likely you are. 

I finally got an official diagnosis. I found an autistic psychologist who was reasonably priced and didn’t rely on male children standards to diagnose me. She fully understands autism, adults and women adults in particular. 

I don’t feel vindicated because I didn’t question my self-diagnosis to begin with. I am realistic enough to understand that people might still not believe me. The unexpected effect was how good it felt to talk to another autistic person who didn’t doubt it for a minute.

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